Where to go from here?

[Gsp177]

I'm 33 year old male. I've had years and years of symptoms which have gone on untreated and undiagnosed. Being treated by a Naturopath the last couple of years. Am on Nutri Thyroid and Thyro complex, Adrenal and GTF complex. My symptoms and thyroid results gradually improved it peaked in March 2013 and then for some unknown reason my Free T4 level crashed.

End March 2013: Felt an improvement

Free T3. 7.4 pmol/L (3.5 - 8.1)

FreeT4. 15.1 pmol/L (11 - 22) Below reference limit

TSH 0.01 mu/L (0.27 - 4.2)

Last summer, in that heat I was feeling dreadful, I had my thyroid checked and my free T4 level had dropped to 9.3 it's lowest I've known it to be.

Mid July 2013: Felt dreadful

Free T3. 4.8 pmol/L (3.5 - 8.1)

FreeT4. 9.3 pmol/L (11 - 22) Below reference limit

TSH 0.39 mu/L (0.27 - 4.2)

I'm heat intolerant symptoms seem consistent with Chronic Fatigue/ME and Fibromyalgia. I have a low basal body temp on waking 35.4oC. Muscles pain, knots, temder trigger points. Fatigue etc. I struggle to do a full days work and the symptoms are really effecting my quality of life.

Forward to Jan this year after a battle my doctor put me on a trial of thyroxine 50mcg.

I then went private and saw an Endo as I was suspecting secondary hypothyroidism, Endo agreed and ran some more tests. One of this tests was an MRI scan of my pituitary. That came back ok, although the Endo thought my pituitary wasn't releasing enough TSH. So he suggested I up my dose of Levothyroxine from 50mcg to 75mcg along with my Nutri thyroid supplements and Sertraline.

( When I showed him my results from the previous March he assumed when my Free T4 was 15.1 and my TSH was suppressed that I was on Levothyroxine, as the results were suggesting over medication.....?! He found it interesting that I wasn't on Levothyroxine and I was only on the Nutri supplements).

Anyway 6 weeks after starting the increase in dose I then went and had some bloods taken. I had two tests, NHS one which only measured Free T4 and TSH. At the same time I got the nurse to draw blood for a Thyroid Plus test which Genova Diagnostics produce. The results are as follows:

NHS Results (Taken same time as private bloods)

Serum Free T4 level 13.4 pmol/L. (11.0 - 22.0) thyroid results suggest adequate thyroxine replacement.

Serum TSH level 0.13 mu/L (0.27 - 4.2) below low reference limit

Genova Diagnostics Results 24/09/2014

Total T4. 66.1 nmol/L. ( 55 - 154) Low outside ref range but in optimu

TSH 0.113 miu/L. (0.4 - 4.0) Low outside ref range

Free T4. 12.7 pmol/L. (10 - 22) Within Optimal Range

Free T3. 6.55 pmol/L. (2.8 - 6.5) High Outside Ref range

FT4 : FT3 ratio. 1.9. (2.0 - 4.5) Low outside Reference range

Reverse T3. 0.24 pmol/mL (0.14 - 0.54) within optimal range

Thyroglobulin. <20. IU/mL (0 - 40) within optimal range

Peroxidase. 17 IU/mL. (0 - 35) within optimal range

I went back to my Naturopath and he thinks I should up my dose of Levothyroxine from 75 mcg to 100 mcg, just on a trial basis to see the effect it has on my symptoms. I wrote to my Endo to see what he would make of it if I increased my dose.

The reply I got back from my Endo was he thinks that as my blood test shows a slightly low TSH he doesn't feel there is any room for increase since this is quite likely to be an excessive dose which in itself will cause you symptoms. So he thinks I should remain on the 75mcg. He states that it may well be that the refractory nature of your residual symptoms does reflect chronic fatigue syndrome/ME which is best treated by attention to lifestyle exercise with the aim to improve physical fitness. He goes on to say that he doesn't feel at the moment there is any indication for any additional hormonal or metabolic treatments and I should continue my current dose of Levothyroxine and Sertraline.

Out of all the tests I've had the main thing I have to go on is when I felt better is when my Free T4 was 15.1 and my TSH was suppressed. I'm at a stage now where I have nothing to lose, life is passing me by and I just want to get better. I think it's going to take someone to think outside of the box and not be hung up on the blood results to get me right.

I'd really appreciate people's thoughts and experiences?

What would you do, suggest? I'm wondering whether to increase my dose from 75mcg to 100 mcg to see what or if it has any effects on my symptoms or my other option is wait till December to see the Endo to see where we go next?

Sorry for the long post.

[HEA72]

Poor you, how frustrating, I do empathise. Can I just say to these un-educated doctors that 'M.E./CFS/Fibro' is not a diagnosis it's a label for a group of symptoms. I'm stating this because it infruriates me when these 'label's are given to their patients when they don't know what's wrong. I've been one of these patients! These labels all have causes and finding the causes are key and it sounds like a new direction is needed. I recommend looking at Dr Sarah Myhill's website drmyhill.co.uk and reading up on there about 'mitochondrial failure'. Seeing another private doctor (doctor's list on Dr Myhill's website) who can run an ATP profiles blood test (details on Dr Myhill's website) may provide more answers for you. This path helped me a great deal, understand the causes to my 'CFS' and start a pro-active treatment plan. It was the cornerstone on my healing journey.

[Gsp177 in reply to HEA72]

Many thanks, my Naturopath ran the ATP profile on me and the results were very interesting. Sadly orthodox medicine don't officially recognise it yet. How have you got on?

This is what infuriates me as well, easy for them to fob you off with a label rather than get to the route cause of the matter. Up to now I have felt like I've been getting somewhere with the Endo.

[HEA72 in reply to Gsp177]

I know it's crazy that the orthodox route doesn't recognise it. Yet the lab tests to diagnose it are all science based. Saying that Dr Myhill is from the orthodox origin and look how she's evolved! So it is possible if the mind is opened up a bit more. I too have thyroid issues and have had adrenals issues too (tied in together). I'm still on my healing journey. Once I began the full Dr Myhill treatment protocol for mito failure (with NDT) this was a cornerstone in my recovery. I've also found lots of emotional work plays its part too, as those darn emotions always seem to play their part in these chronic illnesses. EFT, craniosacral therapy and learning how to meditate have been particularly beneficial. I'm much better to what I used to be but it's still work in progress as I seem to be working against the tide of life a lot of the time, with working, bringing up two young children - not much time for quality respite. But I'm determind to keep on my path and regain better health.

[shaws Administrator]

Before the blood tests were introduced as a positive diagnosis of hypothyroidism over the skill of the doctor listening to the patient, taking note of the clinical symptoms, family history and personal history people were diagnosed according to the clinical symptoms and medicated with natural thyroid hormones.

Fibromyalgia, CFS and ME were thus diagnosed around ten years later as their TSH didn't fit the bill and were 'mysterious diseases'. That's not to say there is no such thing but would appear the taking thyroid hormones alleviated their symptoms.

web.archive.org/web/2010103...

If you email [e-mail] and ask for the list of private doctors, NHS Endos who may be helpful. This is an excerpt which I think you will find helpful and there are plenty of questions/answers on the subjects in the Q and A section.

Many of us have been down the lonely road you are on at the moment but by reading and getting support you can get your health back. It may take a little time but you can get there.

[Gsp177 in reply to shaws]

Thanks Shaws, I quoted that line to my old GP he was wasn't too impressed haha. But I think it holds a lot of truth. Is sad that many Dr's don't put two and two together and think outside the box. Maybe they would see things differently if they or a family member suffered from symptoms.

[greygoose in reply to Gsp177]

They're no better at maths than they are at anything else!

Oups! Sorry, my cynical side peeping out!

[Clutter]

GSP, It's likely you felt well in March because your FT3 was almost at the top of the range rather than your FT4 being 15. Your FT3 is now just above range and if you have any symptoms of anxiety, jitters, tremors, palpitations, diarrhoea and fatigue (some, not necessarily all) you may be slightly overmedicated and might try cutting your Levothyroxine to 50mcg one day a week to see whether symptoms improve.

If you decide to take your naturalist's advice to increase dose and see whether it improves your symptoms perhaps you could try 75mcg/100mcg on alternate days. It will push your FT3 further over range if you do but you may be an outlier who needs elevated FT3 to feel well. Your endo will be very unhappy about FT3 over range, just to warn you

Considering your TSH was suppressed and low before you started Levothyroxine and your endo said you aren't producing enough TSH I don't understand why he thinks your TSH level has any validity. FT4 and FT3 are the only valid tests when pituitary is producing insufficient TSH.

[Gsp177]

Thanks Clutter, I know when I increased my dose of Levothyroxine from 50mcg to 75mcg, for the first few days I felt very anxious was like things were moving. Took a few days to adjust then I plateaued out again. I suppose the 50% increase was a shock to my system and it took a few days to adjust.

At present I don't feel I'm over medicating, my naturopath did suggest the same to try 75mcg/100mcg on alternate days for 10 days or so then go to the full 100mcg.

This is the thing Clutter, it sounds like my Endo is back tracking, last appointment I saw him he said to me the TSH is unreliable when it's suspected secondary hypothyroidism is involved especially if it's a pituitary issue. I thought great he's going to be looking and treating my clinical symptoms. Now he's saying My slightly low TSH is indicating I'm having an excessive dose.

I think I will write to my Endo, as there's a few things I can pick up and press him on.

[Clutter in reply to Gsp177]

GSP, sometimes trying out an increase/decrease in dose to see how you feel can be helpful.

Your endo would have more credibility to me if he ignored the TSH and focused on FT4 and FT3. Because your FT3 is already over range I think it's likely he will consider that you are already overmedicated and is very unlikely to approve a dose increase.

[Gsp177]

I've not shown the Endo my private test results from Gemova just yet have only shown him the NHS test result. So he's only aware of my Free T4 level and TSH reading. It's interesting that the NHS free T3 range greatly differs to Genova Diagnostics.

Free T3. 7.4 pmol/L (3.5 - 8.1) NHS Range 2013 (Felt better)

Free T3. 6.55 pmol/L. (2.8 - 6.5) Genova Diagnostics Range 2014

(Not so well)

What would your take on this be, the Genova Diagnostics range is set too low?

[sip1]

From personal experience - I found that I felt similar when I was over-medicated, as when I was under-medicated, so bear that in mind if you do increase further. It was only when I had another blood test did I realise I wasn't needing more - I was needing LESS! Because I had it in my mind that 'most' people felt well around the 3-4 grains mark, taking as little as 1 and a half/ 1 and three quarters didn't seem to make sense. But it's the right amount for me, I know this now It's very much a trial and error to find the right balance, which can take time.

[Gsp177 in reply to sip1]

Thank you, you're on NDT I take it? What were your levels like when you were over medicating?

[sip1 in reply to Gsp177]

Yes I'm taking NDT

I'm not sure what they were like when I got up to 3, but I felt pretty hideous lol On 2 grains, my results were:

TSH 0.01 (0.35 - 4.5)

FT4 18.7 (11.0 - 24.0)

FT3 7.6 (3.9 - 6.8)

On 1.5:

TSH 0.01 (0.35 - 4.5)

FT4 15.4 (11.0 - 24.0)

FT3 6.0 (3.9 - 6.8)

I've increased by a quarter every other day, so hopefully my T3 will be a bit higher, without taking it over but will have it tested again soon to find out.

[Gsp177 in reply to sip1]

How well are you feeling now would you say on that current dose?

I'd like to see how I would feel if I could raise my levels of free T4 and Free T3. As you mentioned it seems it's all trial and error and it's just finding the right balance that works for each individual.

[teenarocks]

GSP, have you been tested for Hashimoto's? I don't see any antibodies tests in your results. In addition to regulating your thyroid hormone you will need to repair your gut and support your immune system. This means eliminating all gluten, caffeine and alcohol from your diet and possibly soy and dairy. Reduce your sugar intake also. After about three months you should be feeling better. Eat lots of fresh vegetables, lean protein and some fresh fruit. Then when you're feeling better you can think about exercise. Telling patients who are totally exhausted and suffering body aches to exercise is like thowing a drowning man a lead brick. I know, I've been there. BTW, if you do have Hashimoto's you will need to eliminate gluten forever.

[Gsp177 in reply to teenarocks]

Thanks have you found that diet beneficial in your recovery?

Up to now I hadn't had my antibody levels checked, I tried but the GP wouldn't do it. So was fortunate to get it done on the thyroid test Genova offer.

Thyroglobulin. <20. IU/mL (0 - 40) within optimal range

Peroxidase. 17 IU/mL. (0 - 35) within optimal range

[teenarocks in reply to Gsp177]

It seems you do not presently have Hashimoto's based on your test results. I have had Hashimoto's for many years and only recently found out. It has destroyed my thyroid. The diet has proven to be very beneficial for me and I believe was the missing piece of the puzzle for treating Hashimoto's.

In your case it's probably just a matter of getting your medication regulated. I hope you have a good doctor who will work with you. It makes all the difference. If you don't, I hope you will keep looking until you are satisfied. I know it can be frustrating.

[Gsp177 in reply to teenarocks]

Many thanks, I'm ever so sorry to here that your thyroid has been destroyed. The only autoimmune condition I have that I'm aware of is that I suffer from psoriasis I have done since I was about 13 years of age.

[PR4NOW]

The other thing you might consider is backing off the T4 and adding some T3. Just a thought. PR

[Gsp177 in reply to PR4NOW]

Thanks that has crossed my mind. Going to write to my Endo first and see if it takes me anywhere...

[J1972]

I have and am experiencing exactly the same as yourself, but instead of going for private, I research then go see an nurse I've known in the hospital dept I've been treated under for 15 years and get them done free, good job as my GP surgery failed to pick up on TSH being 4.0

I too started on 50 then 75 now 100 all done slowly as my heart muscles don't work properly either so they take increases every other day before next increase. In this long term approach and hospital peer to peer referral scams where they deliberately ignore to book just to keep waiting list down, all too obvious when 3 referrals never happen twice then you make a complaint and all come together.

I've been taking Gabapentin for years for a trapped c4 c5 nerve, which nobody linked to my hypo

I've been taking 200mg sertraline daily for BAD depression

Aciclovir to keep shingles away

My current GP lets me have telephone appt as it kills me getting out, she let me up the dose to 100 got face to face on Friday if this current lump in neck doesn't take me there earlier

I just want to get better and back to normal life

Have you had any issues with your sense of smell. (Anosmia)?